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  • Housebound and trying everything

    Hi everyone
    Posted back in September about my struggle with dry eye -drops every half hour, ikervis, moisture chamber goggles , Salagen tablets. compresses and lid wipes twice daily. I am based in the UK. I have had 2 IPL treatments which seemed to help for a couple of days and am trying doxycycline again. The optometrist also suggested I try scleral lenses. Was starting to see a glimmer of hope but am now despairing again. While waiting for the scleral lenses was prescribed steroid drops to which I had a bad reaction - lids swelling and a rash. They have really upset my eyes - I then had a stye which has lingered for 8 weeks now so cannot have lenses fitted and also had a slight infection in the other eye. The worst of it all though is that I accidentally sat near to a radiator which I thought was turned off but turns out it was not and since then my eyes have felt really dry. I am now worried that my eyes will be too dry to wear sclerals at all. I don't know how many people end up being housebound with this condition but I have been like this for months and finding it difficult to keep up hope.

  • #2
    I致e been disabled by my condition and even though I知 doing very well now, I am not at all normal. I have to wear moisture chambers or I get burn. Could be mild, could be searing pain. As long as I wear them and stay on my medication, I知 pretty good. I can稚 travel very well. I know that I may be house bound again. This is just my life now. Pretty insane thing to wrap your head around. I知 38 and pretty much healthy otherwise.

    Dont worry about being too dry for sclerals. Cross that bridge when you get there, but you should be fine if you have a good fitter (this is my understanding).

    Try to stay positive and keep looking for answers as to why this is happening. It took me a long time to get an accurate diagnosis. I知 not saykg the diagnosis will cure you, but I think a solid diagnosis can get you functioning again. Good luck, I wish you the best. I知 having a rough day, so I can understand your pain quite well...I知 sorry.

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    • #3
      Sclerals can be worn even with very little oil if they fit well. Tears are important though.

      I wear sclerals and moisture chambers together. Works alright. I am functioning again and not house bound at all. Still some pain in my left eye which kind of defies understanding since its under a lens bathed in celluvics.

      Still trying to dial in that eye. Right eye is good. I have very, very bad MGD and nerve pain. Tear volume is good.

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      • #4
        holly123 sorry to hear about fluctuations in your symptoms. I also struggle with changes.

        Will you have more IPL treatments? Two is not enough. I had three but most people have four.

        What kind of lid scrubs are you using? My doc urged me not to use foamy ones regularly. She prescribed me Avenova and now I use Ocusoft Hypochlor (same idea).

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        • #5
          I think a minimum of 4 IPL is usually recommended but I have had a total of 6 and I feel really quite good these days....ditto, 2 is not enough. I may have more if need be but at the very least I am going to get monthly expression by the doctor.

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          • #6
            Thanks for the replies. Am scheduled to have 2 more IPLs although have been told only have 20 -30% of glands left. Really feel like sclerals are my last hope. Am seeing the optomotrist this Thursday

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            • #7
              Holly123, did the Lipiview show gland loss? The reason I am asking is that in my case, not all glands are expressing but if you take a pic, they are still there, fat with oil that is too thick or stuck so I did Lipiflows and manual expression in addition to IPL.

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              • #8
                Originally posted by holly123 View Post
                Thanks for the replies. Am scheduled to have 2 more IPLs although have been told only have 20 -30% of glands left. Really feel like sclerals are my last hope. Am seeing the optomotrist this Thursday
                I am in a similar situation to yourself. I had 2 IPL sessions but stopped after that as there was no improvement and I couldn't justify the cost. To be fair, they said even after 6xIPL sessions, there is only a 50% success rate. I had another consultation somewhere else and they told me that while it takes 3-6 sessions to see any improvement, there was no point having IPL done if there is significant gland loss as it only works when the glands are still there but are blocked.

                In my case, 75% of my glands have atrophied and nothing is going to bring them back.

                By all means carry on with the IPL, I hope it works.

                Comment


                • #9
                  Originally posted by Alix View Post

                  I am in a similar situation to yourself. I had 2 IPL sessions but stopped after that as there was no improvement and I couldn't justify the cost. To be fair, they said even after 6xIPL sessions, there is only a 50% success rate. I had another consultation somewhere else and they told me that while it takes 3-6 sessions to see any improvement, there was no point having IPL done if there is significant gland loss as it only works when the glands are still there but are blocked.

                  In my case, 75% of my glands have atrophied and nothing is going to bring them back.

                  By all means carry on with the IPL, I hope it works.
                  I am sure that what glands you have left, that 25%, are blocked and I am not sure I get the logic of ignoring them. If they were mine I would work my butt off to save them even if I didn't perceive results from the IPL. My doc says you can be comfortable with as few as 30% glands functioning and very few have results with only 2 sessions. I think you are making a mistake in quitting so soon.

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                  • #10
                    Have not had lipiview but optomotrist said glands had dropped out. It's difficult to get lipiview in the Uk I think. Am definitely carrying on with IPL as don't really have any other options

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                    • #11
                      Originally posted by holly123 View Post
                      Have not had lipiview but optomotrist said glands had dropped out. It's difficult to get lipiview in the Uk I think. Am definitely carrying on with IPL as don't really have any other options
                      Hello you can get Lipiview done at the Dry Eye Centre in London. I had mine done there and I highly recommend it.

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                      • #12
                        Originally posted by farmgirl View Post

                        I am sure that what glands you have left, that 25%, are blocked and I am not sure I get the logic of ignoring them. If they were mine I would work my butt off to save them even if I didn't perceive results from the IPL. My doc says you can be comfortable with as few as 30% glands functioning and very few have results with only 2 sessions. I think you are making a mistake in quitting so soon.
                        Hi I had my last IPL session about 2 months ago. Am I right in thinking that if I do decide to get IPL done again, it will be as if I am starting from scratch as the effects of the first 2 sessions will have worn off? I wish it was more affordable....

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                        • #13
                          Originally posted by Alix View Post

                          Hi I had my last IPL session about 2 months ago. Am I right in thinking that if I do decide to get IPL done again, it will be as if I am starting from scratch as the effects of the first 2 sessions will have worn off? I wish it was more affordable....
                          I can't answer that but I know that I had about 3 months in between #4 and #5/6 and the expression was MUCH easier. Yes I agree it is expensive but if it helps save the glands you have left. it will be worth it. Now that my oils are expressing easier I am going to switch to monthly manual expression. They heat the eye with a compress and then express.

                          The blinking exercises will help keep the oils flowing as well.

                          Comment


                          • #14
                            Originally posted by farmgirl View Post

                            I can't answer that but I know that I had about 3 months in between #4 and #5/6 and the expression was MUCH easier. Yes I agree it is expensive but if it helps save the glands you have left. it will be worth it. Now that my oils are expressing easier I am going to switch to monthly manual expression. They heat the eye with a compress and then express.

                            The blinking exercises will help keep the oils flowing as well.
                            Thank you I will bear this in mind. I am doing blinking exercises now as well.

                            Comment


                            • #15
                              What blinking exercises do you do? I use Blephaclean wipes twice a day

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